In 2008, Dr. Mikovits presented information on XMRV to a symposium of researchers of chronic illness, hosted by Gordon Medical. In 2009, our office was asked to provide samples for XMRV testing, to see whether the retrovirus might be found in asymptomatic people who have close contact (contact controls) with CFS patients. Though we do not yet have final results on those tests, it does appear there is a higher incidence of XMRV in our contact controls than was found in other studies in the general healthy population. Dr. Paul Cheney, another CFS researcher, found almost 50% of his contact controls are positive for XMRV.

After the Science paper was published, Dr. Mikovits offered to provide testing for more patients through GMA. Just over 200 people provided blood samples for that study, including people with CFS and many other chronic conditions, in an effort to learn whether XMRV might be a cause of other chronic illness than CFS.

Gordon Medical has only preliminary analysis of the data, as we are still waiting for results on many of the samples. So far we have 52 people who test positive for XMRV through our office, whether by culture (viral particles) or by serology (antibodies). Those people include patients with CFS, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer. Dr. Cheney is finding that nearly all of his Lyme and mold related cases are positive for XMRV, so we expect that we will have more positives in those groups as more results come in.

We know the participants have been anxiously waiting for further results. We have not received any new results from WPI in the last few months, as Dr. Mikovits has been working to get the research moved into WPI's new building, and to establish the consistency of XMRV testing. XMRV has proven to be extremely difficult to find with commonly available tests. There have been studies in which researchers were unable to find the retrovirus in any participants, and there is controversy over whether this is due to testing difficulties, or whether XMRV is not as prevalent as claimed by the researchers who have found it in patients.

"Proving that xenotropic (XMRV) or polytropic (MLV-related viruses) are present in Chronic Fatigue Syndrome would be the first step towards determining if these viruses actually cause disease. This is an important question, because a large fraction of the world population, estimated at 0.4-1%, is affected by CFS.", states Dr. Ila Singh, another XMRV researcher.
October 26, 2010 - Dr. Ila Singh - Viruses

Dr. Mikovits believes that a positive test for either culture or serology indicates an infection, as retroviral infections are considered to be lifelong. If you are positive for one, it is not necessary to test for the other. However, if you are negative for one, that does not rule out the possibility of infection. In that case it is necessary to do both tests to ensure the best chance of finding the infection if it is present. We are still waiting for secondary testing on those study participants who tested negative on one of the tests.

Recently, Dr. Gordon spent a weekend with Dr. Cheney, sharing ideas on how treatment might work for XMRV patients. It is still unknown whether XMRV and the other HGRV viruses are the primary cause of the illnesses they are associated with, or whether infection reflects an inability to maintain effective immune surveillance.

For now, all treatments are experimental. Some patients may choose to do a trial with antiretrovirals (ARV), either natural or conventional. Conventional ARVs are the drugs used to treat HIV and AIDS. While XMRV and HIV are not identical, some of the knowledge gained in treating HIV may be useful in discovering what works for XMRV.

It is important to manage inflammation, one of the primary issues with retroviruses. There are natural and conventional options to treat inflammation, depending on your needs and preferences. Working to balance hormone levels is another aspect of treatment, as these retroviruses seem to be hormone sensitive. Finally, if you have other health issues or infections, it is important to continue treatment to manage those. While XMRV may be proven to cause other diseases, it isn't known yet whether treating the retrovirus directly will be sufficient.

Dr. Mikovits has been actively in touch with physicians who are experimenting with XMRV treatment, and we look forward to hearing any new information she might have to share in January.

If you have a question for Dr. Mikovits, please send the to susan@gordonmedical.com . They will be passed on to Dr. Mikovits, and she will do her best to answer questions during the time allowed for her talk.

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Gordon Medical Research
Is Proud to Host
Dr. Judy Mikovits, PhD
Co-author of the seminal 2009 paper "Detection of an Infectious Retrovirus, XMRV, in Blood of Patients with Chronic Fatigue Syndrome"

Sounding more and more like a secondary issue rather than the primary cause. I think the only way this virus is going to be the cause of M.E. is if a situation arises that lets this virus run wild in the body... at which point we have to ask what happen to allow this? Genetic factor? Enviromental toxin? and why is this virus any more important that any of the other pathogens found/discovered in M.E. patients? Just being a retrovirus really means nothing when comparing to other infections.

I think the only way to answer this is an a drug trial aimed at XMRV. If the patients get significantly better in 6 months then there is something to it... without a trial it could be 10 years plus to get to the bottom of this.. and if they find after 10 YEARS! XMRV is playing a role..then drug trials? who can wait?

I 'm not trying to bad mouth them, Floydguy, but I've been a patient of theirs since 2001. I am bedridden once again, as I was when I first started seeing them. I've been told I have Lyme and coinfections, mold susceptibility, CFS, detox issues and now, yes, XMRV (I'm probably leaving something out!). I was one of the people in the study. So, just because a practictioner knows about these things and "treats" for them doesn't necessarily translate into improvement in a patient's health. GMA apparently has many "still sick" patients, not only me. They try, but they don't have "the answers". I fear their publicity successes may exceed their treatment successes. I'm sure they will gain many new patients from this lecture. Don't be lulled into thinking that they don't know it, too!

I 'm not trying to bad mouth them, Floydguy, but I've been a patient of theirs since 2001. I am bedridden once again, as I was when I first started seeing them. I've been told I have Lyme and coinfections, mold susceptibility, CFS, detox issues and now, yes, XMRV (I'm probably leaving something out!). I was one of the people in the study. So, just because a practictioner knows about these things and "treats" for them doesn't necessarily translate into improvement in a patient's health. GMA apparently has many "still sick" patients, not only me. They try, but they don't have "the answers". I fear their publicity successes may exceed their treatment successes. I'm sure they will gain many new patients from this lecture. Don't be lulled into thinking that they don't know it, too!

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Well said. Count me as another very sick patient. They do try but they don't have the answers. I've paid them a lot of money but I haven't improved. I think their strength lies in treating other chronic illnessess rather than me/cfs. They did participate in a study with WPI. I took part in a study well over a year ago but still have not received my xmrv results which I think is just ridiculous.

I don't see GMA really advocating for patients anymore and I've seen them change from a patient oriented practice to a money oriented practice. Sad but true.

but I've been a patient of theirs since 2001. I am bedridden once again, as I was when I first started seeing them. I've been told I have Lyme and coinfections, mold susceptibility, CFS, detox issues and now, yes, XMRV (I'm probably leaving something out!). I w

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This is almost like the merry go around is it not? The usual suspects...I wonder how many people actually get better??? All these different diagnoses........again and again........(but then where else do you go ?)

I 'm not trying to bad mouth them, Floydguy, but I've been a patient of theirs since 2001. I am bedridden once again, as I was when I first started seeing them. I've been told I have Lyme and coinfections, mold susceptibility, CFS, detox issues and now, yes, XMRV (I'm probably leaving something out!). I was one of the people in the study. So, just because a practictioner knows about these things and "treats" for them doesn't necessarily translate into improvement in a patient's health. GMA apparently has many "still sick" patients, not only me. They try, but they don't have "the answers". I fear their publicity successes may exceed their treatment successes. I'm sure they will gain many new patients from this lecture. Don't be lulled into thinking that they don't know it, too!

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Absolutely no illusions about them being any better than anyone else but at least it's one stop shopping. My Lyme doc is in CT, my mold doc in MD and my CFS doc in Florida. Having all the non-answers under one roof would at least be convenient!

I think it shows how difficult things are. I know some people do better with Fibro Fatigue Centers but alot of people apparently don't. (It would be great to have a survey....) - and they seem to be covering all the bases, really......so much is missing....

That's why i still think it's better to abstain from such therapies and wait until they have really figured out what ME/CFS is and can do something that targets that mechanism.
So many people that have tried those therapies but haven't improved. When looking at the success rate (ok, i don't really know the rate but it can't be very high) i prefer avoiding taking a lot of medication for years and possibly doing more damage than it actually helps me. I think i rather try to preserve my body for the time when there is a working therapy.

I think the only way this virus is going to be the cause of M.E. is if a situation arises that lets this virus run wild in the body... at which point we have to ask what happen to allow this? Genetic factor? Enviromental toxin?

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We know this a-priori. ME/CFS is an illness which is triggered by an identifiable preceding event in most people, most often infection (e.g. EBV).

and why is this virus any more important that any of the other pathogens found/discovered in M.E. patients? Just being a retrovirus really means nothing when comparing to other infections.

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Actually it does. The 2 other known human exogenous retroviruses (HIV and HTLV) are both causative for serious disease, and certainly not secondary infections. We know in mice that MLVs cause serious degenerative neuroimmune diseases.

I think the only way to answer this is an a drug trial aimed at XMRV. If the patients get significantly better in 6 months then there is something to it... without a trial it could be 10 years plus to get to the bottom of this.. and if they find after 10 YEARS! XMRV is playing a role..then drug trials? who can wait?

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I agree with you 100% on that point. The best way to move forward is a drug trial IMHO. Unfortunately the naysayers are holding this up.

That's why i still think it's better to abstain from such therapies and wait until they have really figured out what ME/CFS is and can do something that targets that mechanism.
So many people that have tried those therapies but haven't improved. When looking at the success rate (ok, i don't really know the rate but it can't be very high) i prefer avoiding taking a lot of medication for years and possibly doing more damage than it actually helps me. I think i rather try to preserve my body for the time when there is a working therapy.

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This! This is why I am not bothering with doctors or tests at the moment. I have had my share of them and they couldn't make me better. I am now taking some simple medication and supplements and biding my time. Need a real treatment! As soon as the cat is out of the bag, I am going to storm the doctors office again. Unfortunately it could be a long wait, until we have a decent treatment, that works for most patients...

Yeah, we really have to do whatever we can to shorten that time. Nobody here wants to wait... What makes it hard to know what to do is that it seems to be very difficult to assess how long it will take. There could be some big news out quickly that will change everything or it could go on and on.

That's why i still think it's better to abstain from such therapies and wait until they have really figured out what ME/CFS is and can do something that targets that mechanism.
So many people that have tried those therapies but haven't improved. When looking at the success rate (ok, i don't really know the rate but it can't be very high) i prefer avoiding taking a lot of medication for years and possibly doing more damage than it actually helps me. I think i rather try to preserve my body for the time when there is a working therapy.

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We all face this dilemma. There are a million treatments out there that purport to make people better and cost tons of money but don't necessarily lead to any improvements.

That said there are some things to try that will (unfortunately) not cure you, but can lead to some incremental improvements and won't bankrupt you. I'm by no means cured, but I have had some improvements via several inexpensive treatments. These include:

- Low Dose Naltrexone - my insurance doesn't cover it, but I can get it for a bit over $30/month
- Cholestyramine - a number of folks have taken this for shorter periods. I seem to benefit from taking it continually. My insurance covers it.
- Getting better sleep. Unfortunately I have to take a sleep aid every night, but if I didn't I'd be much worse off.
- Rich Van Konynenburg's methylation protocol.

Many of these don't work for other PWCs and I don't know anyone who has tried them and been cured, but for me (and definitely lots of other PWCers) they've helped.

They're all low(er) cost and there's every reason to believe they are low(er) risk treatments. If the choice some people are facing is to try nothing and wait for the ultimate solution or to try some lower cost, lower risk treatments, please at least try out some of the latter.

We all face this dilemma. There are a million treatments out there that purport to make people better and cost tons of money but don't necessarily lead to any improvements.

That said there are some things to try that will (unfortunately) not cure you, but can lead to some incremental improvements and won't bankrupt you. I'm by no means cured, but I have had some improvements via several inexpensive treatments. These include:

- Low Dose Naltrexone - my insurance doesn't cover it, but I can get it for a bit over $30/month
- Cholestyramine - a number of folks have taken this for shorter periods. I seem to benefit from taking it continually. My insurance covers it.
- Getting better sleep. Unfortunately I have to take a sleep aid every night, but if I didn't I'd be much worse off.
- Rich Van Konynenburg's methylation protocol.

Many of these don't work for other PWCs and I don't know anyone who has tried them and been cured, but for me (and definitely lots of other PWCers) they've helped.

They're all low(er) cost and there's every reason to believe they are low(er) risk treatments. If the choice some people are facing is to try nothing and wait for the ultimate solution or to try some lower cost, lower risk treatments, please at least try out some of the latter.

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I completely agree. I've improved quite a bit by doing various low risk treatments. It could still many years before that magic pill becomes widely available. Furthermore, we know that there is a relatively large percentage of people who don't have CFS to begin with. Are you certain you are not one of them? I am not.

The only treatments I wish I hadn't taken were Cortef and some of the harsher Lyme treatments like Mepron but aside from that I am happy that I've experimented with various things.

"Actually it does. The 2 other known human exogenous retroviruses (HIV and HTLV) are both causative for serious disease, and certainly not secondary infections. We know in mice that MLVs cause serious degenerative neuroimmune diseases."

Unfortunately, this reasoning has nothing to do with science fact. This presumption has value in theory but at the end of the day means very little and doesn't advance our understanding of anything.. if not promoting unnecessary stagnation. There is nothing special about it being a retrovirus as far as presuming it causes anything or has any special more severe implications. Based on what? the commonality of reverse transcription? same protein expression?

I am not saying it doesn't cause M.E. but if we are presuming things based on what we know about infection disease in practice and text then the assumption would tilt toward secondary not primary causality.

They will debate the its existence in patients for years and then its going to be extremely difficult if not impossible to prove without a doubt that it causes M.E. within 10 years.. particularly since its being found in many pretty darn unrelated inflammatory disease processes and even in healthies. The only quick answer is treatment with antiretrovirals that are very specific to this virus while not effecting herpes family viruses or any other found in M.E.

They will debate the its existence in patients for years and then its going to be extremely difficult if not impossible to prove without a doubt that it causes M.E. within 10 years.. particularly since its being found in many pretty darn unrelated inflammatory disease processes and even in healthies. The only quick answer is treatment with antiretrovirals that are very specific to this virus while not effecting herpes family viruses or any other found in M.E.

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I'm not willing to wait. Seriously, if ARV trials are the way to go (and i don't know if they are), we will have to go and do them somewhere where it's legal, if they don't do them in our countries. I guess it's possible to do that and i'm not willing to wait. I want to see the association question answered for good quickly and an assay that is reliable. Then they have to go about causation. But i want to see some real progress in those things wihtin 1 year.

I'm not willing to wait. Seriously, if ARV trials are the way to go (and i don't know if they are), we will have to go and do them somewhere where it's legal.

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The good news for Americans is they are legal and are available. I know a couple docs that will prescribe them for CFS when indicated by XMRV. The only catch is.. who is willing to risk themselves with so much uncertainty? There is not only the side effects/damage in traditional usage but many patients will undoubted suffer immensely from the effects. There are so many patients who flat out cant tolerate most meds...and would they be willing to put themselves through that trauma and stick to it if they dont even know if its helping or hurting? I could see many patients dropping out of therapy based on extreme intolerance of the meds themselves...then they have a resistance issue when/if they later find that meds are required. Very difficult choice without good clinical trials...which themselves take years.

The good news for Americans is they are legal and are available. I know a couple docs that will prescribe them for CFS when indicated by XMRV. The only catch is.. who is willing to risk themselves with so much uncertainty? There is not only the side effects/damage in traditional usage but many patients will undoubted suffer immensely from the effects. There are so many patients who flat out cant tolerate most meds...and would they be willing to put themselves through that trauma and stick to it if they dont even know if its helping or hurting? I could see many patients dropping out of therapy based on extreme intolerance of the meds themselves...then they have a resistance issue when/if they later find that meds are required. Very difficult choice without good clinical trials...which themselves take years.

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I'm curious at your line of reasoning Jackson. You say that the indications are that XMRV is a secodary infection? Do you have facts or a line of reasoning to back that up and would you mind elaborating on it here? I'm not asking for you to cite articles but I would appriciate a bit more than just tossing out what 'looks like" an opinion. Thanks in advance.

Jackson - hi. Seem to remember Dr Mikovits indicating at the 1st XMRV Conference that retroviruses are for the most part neuro toxic - though one forum member suggested it didn't apply to all. (Also was there some speculation that XMRV might cause damage to cellular membranes? - can't remember).

She also hypothesised that their very presence might cause a chronic, low grade immune response over years in an individual, leading to inflammation - whichever way one looks at it. And the fact is that ME/CFS patients suffer from inflammation from some source no question - though as yet to be formally identified.

Perhaps the accumulated burden of XMRV together with herpes viruses, EBV, CMV and other pathogens found in varying degrees and varieties in ME patients, and accumulated throughout life in general, plus increasingly ingested and absorbed petrochemicals, plus a nice dose of vaccination challenges before a working trip to boot, might tip a person into hyper immune stimulation/reactivity.

So why can one person get all this and have loads of vaccinations and a heavy work load and etc etc and be fine and not another? Why do some people get severe asthma and not others despite living in the same polluted, allergen loaded environment? WHy do some people get diabetes whereas others can eat sugar to their heart's content? Well life's just unfair.

Who's to say that those 'healthy' members of the population who test positive for XMRV now, are not silently incubating and in a 'slow burn' (which is how my illness crept up on me gradually) ie they will succumb to ME in a few years down the line, or they won't and are asymptomatic but they are still infectious (like Herpes 2)?

We don't have the answers because we are at the cutting edge here. Just to say 'well look that person has XMRV but they are healthy', is in fact possibly not accurate.